The Inconvenience of Healthcare AKA, Making a Big Deal out of Nothing At All

*Never doubt my love of Air Supply.
**Back Story: If you’re new to the blog, I was diagnosed with metastatic thyroid cancer in 2015. I had a tumor that wrapped around my throat and went into my mediastinum; the cancer broke through the capsule of the tumor and went into my lymph nodes. I had a total thyroidectomy (TT) in 2015, and have been on thyroid replacement hormones (TRH) since then (Armour Thyroid). After firing my first set of doctors (oncology, ENT, and endocrinologist–the oncologist didn’t want to see me back for any follow-up care for a year, which my PCP didn’t appreciate; the surgeon became out of my insurance network; the endocrinologist miscommunicated a medication dosage to her staff, and almost killed me), I wound up switching all of my cancer-related care to Barnes Jewish Hospital’s Siteman Cancer Center, where I’ve remained since 2016.
Surgeon: “You need to visit the oncologist for updated testing; it’s been 2 years, so you’re due.”
Oncology Nurse: “Please come in for a consultation!”
Me: Has a day off, arranges schedule accordingly (I work 40 hours a week, and have a 45-minute commute each way. I stay busy. For this appointment, I was going to have my son with me, but whatever–we’d make it work).
Oncology Nurse (2 days before the scheduled consultation): “Oh, no, we don’t want to see you for a consultation until you get all of these tests, which will take an entire week to accomplish. Let’s get this scheduled.” This testing involves 2 days of injections, plus one day of radiation (tracer dose), plus 1 day off (because I can’t be around pregnant people), and then a day of labs and a full-body scan….which didn’t work on me, the last time I did it, and I wound up having to have a very expensive PET scan….so I was trepidatious, to say the least.
Me: Arranges appropriate time off of work; arranges childcare. Gets everything scheduled and gets everything approved through office (which couldn’t come at a worse time, given my current workload). Gets emotionally prepared to be a pincushion for a week. Informs family of process to come, and struggles with ensuing anxiety.
Oncology Nurse: “Oh, no, wait, we don’t want to do any of this testing until we have a consultation scheduled.”
Me: “ARE YOU KIDDING ME?!?!?!?!?!?!?” LOSES MY TEMPER on highly-degreed individuals who have obviously forgotten that I AM A HUMAN, and I am more than the stupid disease that has been hanging over my head for 3 years!!!!! “Could you NOT have decided to do the consultation first, like we ORIGINALLY SCHEDULED, before putting me through all of the hassle to put a very busy life on hold for a week? Could you maybe have REVIEWED A CHART and a medical history, and REMEMBERED a few key details?!?!?! Who decided this?!?  Who decided to do one thing, then another, and then the first thing, after I already rearranged my life?!?!?! The Nurse Practitioner? Can I speak to her?!?!?!” She takes a message, and says the NP will call me back.
Me (super-mad): Calls surgeon who sent me back to oncology in the first place; gets favorite nurse on the phone. “Lisa? Can you help me? Can you talk to them and figure out the why in what the heck they’re doing, since your MD sent me back to that office in the first place?!?!?” She agrees to call them; she was out of the office when I was told to make the oncology appointment, and she’s aggravated that the MD forgot to explain everything to her. She’s been amazing. She can’t help what happens next.
Oncology Nurse Practitioner (now I’ve moved up the chain of command; my phone was IN MY HAND and went to voicemail, and this is what I got): “Mrs. Cooley, the insurance company won’t cover any of the testing until you’ve had a consultation.”
THEN WHY DID THEY CANCEL THE ONE I HAD SCHEDULED IN THE FIRST PLACE!!!!!!!!!!!
I am so sick and tired of the medical BS that doctors put people through, because somehow, in all of this, they forget that we are individuals who put our actual lives on hold to deal with these things that come from out of nowhere to sideline us and our families!!!!! It’s been 12 hours since my conversation with oncology, and I’m STILL mad. It’s an endless cycle of bad communication, and it’s a small wonder that insurance companies are now basically practicing medicine without licenses in order to dictate the course of care/medical authorizations. IF THE DOCTORS THAT ARE RESPONSIBLE FOR THE CARE THAT AFFECTS THE QUALITY OF OUR LIFE CANNOT EFFECTIVELY COMMUNICATE WITH EITHER THEMSELVES OR WITH THEIR PATIENTS, what hope do we have for our medical well-being?!?!
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I don’t think it’s too much to ask, for a doctor to review at the very least, a list of the patient’s diagnoses before they walk into a room for a consultation or order a test…but guess what? They’re so over-scheduled that they don’t have time. BUT, they’re so over-scheduled, because the insurance contracts reduce their allowed amounts to the point that in spite of popular opinion, doctors and hospitals generally make just enough money to make a profit, or even to barely meet costs. My orthopedic surgeon–you know, the woman who was responsible for cutting my feet open and rearranging the tendons so that I could relearn how to walk properly–was allowed maybe 10 minutes for each visit (actually, I think it was 4 minutes) by her overseeing medical group. 4-10 minutes, to make sure that surgery is necessary, that 4″ of incisions are healing properly (mine didn’t), to decide what steps need to be taken–she has 4-10 minutes to make decisions that will affect me for the rest of my life. Me, and the 50-90 other patients that she’ll see in a day.  Fortunately for me, my ortho was AMAZING, and her staff was phenomenal….not every MD is as dedicated, and not every MD can handle the workload they’re assigned (patients, documentation, insurance reviews–it’s more than the average patient understands).
ARE THEY KIDDING US?!?!?!? Are they kidding the doctors? They didn’t sign up for this; they signed up to help people, not to treat them like a cattle call.
But there they are, making decisions, saving lives, and leaving a trail of confusion and frustration in their wake…
At this point, I’m not sure what’s more frustrating—the doctors, the insurance companies, or the diseases that exist in the first place.
I was whining on the phone to my mother last night (God love her, for listening to me), and she pointed out (very gently) that since my thyroid was ripped out, my ability to process my emotions has been greatly affected. I detest admitting that she is correct, but it’s true. I struggle with being angrier when I’m mad, with being deeply depressed when I’m sad. There’s no happy medium with my emotions, and it makes things much more difficult. There are times when I’ve wondered if I’m straight-up bipolar, or on the spectrum, or if I’m just permanently screwed up from all of this. Maybe it’s PTSD on steroids, or maybe I’m just a terrible person. I don’t think it’s normal for people to stew on things like I do, or to have the internal (and sometimes external) monologues that I have to sort things out. I don’t want to admit that I’ve changed, but it’s true: I’m different.
I don’t know if I’m more honest, or if I’m just, frankly, more of a bitch. I don’t know if I’m more unfiltered (because I don’t have the patience to wrap things in snowflakes for the general public), or if the more choleric side to my personality has somehow mutated, but what I do know is that I am sick and tired of the hamster-wheel that a chronic illness put me on.
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I like people less. I have less patience for people. I like the fact that I sit in an office by myself, because I don’t think I can deal with the anxiety and stress that dealing with the public puts me through. I don’t like getting out of my familiar, and I don’t want to do it. When doctors lay out a course of treatment or protocol, I will latch onto that, and Type-A get it scheduled, and God-help-you if you get in the way of MY PLAN.
On the plus side, since my whole cancer debacle, at least you know when you ask me a question, you will get the whole truth, and nothing but the truth, once I’ve warmed up to you and feel like I can trust you with the unfiltered version of me. That takes a while–I’m not as easy of a person to get to know as one would think at first.
I think the thing I’m the angriest about is that I have an incredible amount of anxiety any time I have to deal with the oncology department. I can’t explain it or make it go away; just knowing I have to go back there seems to undo me, and I had just gotten it into my brain that this was actually happening again. Surely I am not the only person in the world who deals with this?!?!?  I had just made peace with it all, and had made my plans accordingly; as aforementioned, I do NOT like it when my PLAN gets messed up or taken out of order, LOL. That’s not doing me any favors in motherhood, let me tell ya’. Am I crazy for being this aggravated about this one instance of medical miscommunication?!? Or should we all get this mad, and maybe make something happen from it?
I know the “right” things to say, here: “God has a plan.” “This will all get worked out.” “Trust Him with your anger.” “Be angry, but don’t sin (stop swearing!).” “Stop ranting (that’s part of my monologue-ing)”. “It’s still the good kind of cancer, right? Be grateful!” Blahbaty-blah-blah. And yes, I’m praying about it..sort of. It’s one of those throw-up-your-hands-and-yell/pray kind of prayers. 🙂 I do that a lot lately.
Healthcare in this country has got to get figured out. I consider myself to be a pretty informed patient after almost 20 years of working in this industry, and if this kind of confusion in healthcare is “normal,” WHAT IN THE WORLD is going on? What have we come to?!? And what are we paying for?!?!?!?!?

Limbo…

Two years ago, I posted a status update that I was basically cancer-free.

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Before you read any further, please note that I’m not saying that I’m not cancer-free. THIS IS NOT A POST TO SAY THAT MY CANCER HAS RETURNED, so please don’t worry. 🙂
It’s actually a post to say that now they’re telling me it may have never really gone away.
Nobody seems to know the real answer to that question.
I’m posting this not as a means of being dramatic or whiny, but because it’s indicative of how confusing the medical industry can be…I’ve been working in healthcare for 18 years, and have had a complicated medical history, yet with all of that, the terminologies and explanations that healthcare providers give can be very misleading…
At this appointment, I was made to believe that I was done with this whole cancer thing…I even looked at my doctor and asked, “So, does this mean I’m done here?” He said, “Yes, but we’ll still need to see you every 6 months for ultrasounds. Cancer-wise, though, you’re in the clear.” I knew at that time that thyroid cancer, particularly when it’s as complicated as mine was, has a high chance of a recurrence, and that stays in the back of one’s mind.
So, here we are, 3 years after my initial diagnosis, and I’ve been a good girl; I’ve taken my meds, gone to Barnes every 6 months, and had my ultrasounds. I’ve dutifully supplied my blood tests on time, and I religiously maintain a spreadsheet of my results. My lymph nodes in my neck have finally started to shrink, and that’s a positive change since my biopsy in January of this year (when they actually suspected that I might have lymphoma, which was terrifying; turns out that I was still dealing with the after-effects of having mono the summer before). However, I continue to have something called, “residual activity” that shows up on my ultrasounds. It showed up on my PET scan in 2016, and it’s never actually resolved. So, how can I be told that I’m “cancer free,” when in fact. that’s not necessarily accurate? There should be NOTHING in my thyroid bed, yet there’s that stupid thing, boppin’ around on my ultrasound. I don’t have cancer, according to my labs…BUT my labs never said I had cancer in the first place–that’s the anomaly of my particular case of thyroid cancer. I never registered as having cancer, via labwork or biopsy, even though the cancer cells broke through the capsule and went into my lymph nodes. We didn’t know I actually had cancer until I was in the process of having my thyroid removed, when the surgeon biopsied me on the table. Now, however, according to my surgeon and the ultrasound (AKA, “anatomical scan”), I’m not totally clear, and I’ll need to see my oncologist again for follow-up scans (functionality scans, AKA, another PET scan).
I know everything is fine, but you mention the word, “oncologist” to me, and my anxiety skyrockets. I’m not sure why it freaks me out so much; I’d rather never see an oncologist again. Thyroid cancer is a SUPER-slow growing cancer, so even if my tests are positive or questionable, I really have nothing to worry about. It’s just a stupid mind-game, and I hate how it affects me (and everyone I care about).
When we lived in Kentucky, I had an accident with Holly, and wound up tearing a tendon in my wrist. I didn’t COMPLETELY tear the tendon, and as a result, instead of a simple surgery to repair the damage, I had 6 weeks in a cast, 6 weeks in a brace, and 12 weeks of physical therapy. Something relatively simple became extremely complicated; what sounds like the better version of the injury was actually worse than the reality (Partial tear vs. Complete tear). I feel like thyroid cancer is like that. It’s the “good” kind of cancer–it’s “easily” treated. You remove the thyroid, and we’re good, right? Not really…My dad had a kind of cancer where they removed it all with surgery, and everything was fine–no meds, no radiation, and no chemo. You’d think that thyroid cancer was like that, based on the whole, “just remove the mass and the thyroid” thing. No one talks about the chances of recurrence, the residual activity, and the extreme difficulty in balancing the medication that replaces your thyroid. No one tells you about all of things that are affected by your thyroid–the energy levels, the hormones, the immune system (in my case, because of lymphatic involvement). They don’t tell you that when you catch a basic cold, you’d better call your doctor, because it’s gonna mutate and turn into bronchitis or pneumonia or whatever, because your immune system’s compromised. I just started my 3rd or 4th round of antibiotics this year, and my 2nd round of steroids…over a dang COLD.
My nervousness/drama over the thought of additional testing/seeing the oncologist is admittedly stupid. I’m being WAY overly dramatic, especially when I think about all of the people I know who have dealt with “real” cancers…the ones that require multiple rounds of chemo and radiation, the ones that incapacitate people and take lives…Thyroid cancer is often treated by the medical community as the “good” kind of cancer, so the issues that we deal with are not treated with the seriousness or compassion that I believe they should entail.  Thyroid cancer is, by definition, “easy” to treat in comparison to every other kind of cancer, based on the previously stated premise that you just remove the organ, give the patient a replacement med, and send them on their merry way. It’s not like I’ve had a breast removed or lost a kidney…I’m not visibly scarred (unless you know where to look).  I didn’t lose my hair (well, I did, but no one really noticed, and it’s all grown back). My issues have all had to do with regulating the thyroid replacement medication, and that’s a process that will go on for the rest of my life. If I gain weight (huge struggle) or if I lose weight (ha!), the dosages have to be recalibrated. Right now, I’m actually medically slightly hyperthyroid, but the consequences of re-calibrating the medication are worse than dealing with the effects of being hyperthyroid (sleeplessness/heat intolerance/anxiety) so we leave it as is for now.
Ask anyone in my family, and they will tell you that my life after having the “good” kind of cancer is very different from my life before.
My son will never know the Mommy that existed prior to 2015, when I had issues, but I also had energy, and I could go outside in the summer and not feel like I was going to pass out (I thought I was heat-intolerant before this, because of my heart. This is another level). He tells my husband that he wants to “take Mommy home, so we can go to the park.” That hurts, I’m not going to lie.
But I’m being stupid. Aren’t just supposed to shut up and be grateful that I got the “good” kind of cancer?
REALLY?
I very rarely let my brain go down the rabbit hole of “why is this happening to me?” I’ve found that’s a very dangerous place to go, and I’ve learned to stifle that fire with a blanket of blind faith and self-control, per the whole, “blessed are they that have not seen, but have believed” verse in John 20:29. I could list the things David & I have been through that I just don’t get, but what point would it prove? We’ve been through hell? Yeah, but so has everyone to some extent. Everyone has their own definition of the worst thing they’ve been through, and my worst isn’t your worst, but that doesn’t mean one is worse than the other–who makes that judgement call? Life isn’t about comparing my life to yours, or your life to Kim Kardashian’s. Life is about doing all that we can to give glory to God in every situation. If the Apostle Paul can do it, so can we.
So, I try to avoid the “why, God, why?!?” Nancy Kerrigan-isms of my life. My life is GOOD!!!!  I love my life! And I’m not defined by this stupid cancer thing, but it does take up an inordinate amount of space in my psyche, particularly when I’m told that I have to go back to oncology and have additional scans in the next 6 months (they’re not in a hurry. That’s the perks of having the “good” kind of cancer. Nothing has to be rushed, which is cool, even though my brain says, “DO IT NOWWWW!!!!” I can wait until my FSA has renewed, LOL). I’ve been pretty whiny with God all week (when I’ve even spoken with Him–I’ve been so dang sick that I’ve barely prayed, which is embarrassing to admit). I did actually say to Him on Wednesday that “I just don’t understand why I get hit will all of this $hit (I’m not gonna fake Him out with some kind of churchy-fake lingo)!!!” And as soon as I said it, I’m like, “Eh, never mind.” I don’t really need to know the definition. Grace tells me it’s not a punishment. Grace tells me that we live in a fallen world full of crappy chemicals and emissions, of hormone-affecting toxins and atmospheric garbage that affects all of us in different ways.
Grace also tells me that regardless of the confusing definitions and my internal/external comparisons, that the bottom line is that it will all be okay. Grace tells me to stop being afraid of words like, “oncology,” and to start saying things like, “stop being a stupid worry-wart, and chill the heck out.” 🙂 (Okay, Grace doesn’t say that. Mom says that, LOL. I love her. Everyone needs someone in their life to cut through their crap, and that’s my mom. She’s like a younger Judge Judy with a penchant for wedding-based reality TV). Seriously, though, Grace says that this is one more bump/hill/mountain in the road, and regardless of what happens, I’ll get through the other side of it. It really, truly is not serious, and it’s only because of the “C” word that it seems so scary. My surgeon actually once said that thyroid cancer shouldn’t even really be termed as a cancer, because it’s such a slow-growing, minor thing to deal with, and that word is so complicated and fearful. I tend to agree with him, even though I know that trivializes something with major consequences.
Seeing an oncologist is actually just part of regular follow-up care for any kind of cancer. I probably should have seen her a year ago, but because things were so well-maintained at my visits with my surgeon and my endocrinologist, it wasn’t brought up. In fact, my endocrinologist isn’t particularly concerned at this point, and I don’t have to see him for a year (yay!). Oncology is routine, even though in MY brain, seeing an oncologist isn’t routine for ANYONE.
Like I said a few (okay, a LOT of) paragraphs earlier, this post is not to say that my cancer has returned…or that it ever reallllly went away. It’s just showing how confusing the medical industry can be (“you’re cancer-free! Oh, wait, you have activity—oh, wait, it’s not enough to worry about—oh, wait, go see the oncologist–but you’re fine!”), and the emotional roller-coaster that goes along with it. I am fine–believe me, I’m as fine as I get. My levels are well-maintained, and if you don’t count the bronchitis/respiratory garbage I keep getting every few months, my energy levels are good. I’m doing a heck of a lot better than a lot of people I read about on my “Life After Thyroidectomy” forum on Facebook!  Hoooo, those Facebook Groups!!!! “I stubbed my toe! It’s because I had a thyroidectomy!!!!! I hate my doctor!!!!” It gets DRAMATIC…and I’m not going to lie, it’s kind of entertaining. It helps me find out what I really need to be concerned about, and clears up a LOT of myths, particularly when I review some of the stuff with my endocrinologist.
Whether I do or don’t have a recurrence of this garbage, everything is fine, and it’s all going to be okay. Even though the thought of something as routine as a follow-up visit with an oncologist is scary to me, I know it’s a good thing to do. Ultrasounds can only tell doctors so much, and additional testing is a good thing. I just have to get over myself and the mental hang-up I have with that word. I don’t see myself as a “cancer survivor,” because of the type of cancer I have; however, I believe we probably all share a similar fear/anxiety of having to see an oncologist, and of the ensuing tests. It is part of the process we all deal with, regardless of the type of cancer. The mental aspects of the terminology are just as emotionally difficult as the physical processes, which is something I think healthcare would do well to address.
Any additional testing I have done will most likely not happen until next year (the perks of “non”-cancer cancers), so I’m probably not going to post anything else regarding my status until then. For me, just writing all of this out has been helpful; only so much can be said in phone calls and 10-minute conversations with spouses. Blogging is my way of having uninterrupted communication, so it’s completely selfish, and I’m not sorry. 🙂 If you’ve stuck with me this far, well, good on ya’, mate! 🙂
This is all just part of the process. And it’s okay. I’ve never been good at any kind of waiting, and I’ve wanted everything to be over and done with for the last 3 years. I’m not really getting that, and I’m not good at not getting what I want. I want closure. It’s not happening. It’s a bizarre kind of limbo.
I’ve never been particularly good at that game. 🙂